Pulmonary Embolism Support Group
By far the most common form of pulmonary embolism is a thromboembolism, which occurs when a blood clot, generally a venous thrombus, becomes dislodged from its site of formation and embolizes to the arterial blood supply of one of the lungs. Symptoms may include difficulty breathing, pain during breathing, and more rarely circulatory instability and death.
There's been much discussion about how residual pain is normal and how frightening it can be, but does anyone have a sense for when this pain should be a real cause for concern or a sign of another clot?
I'm roughly 6 weeks post-Dx, and I thought I was healing quite well because my pain was decreasing and breathing easing. But, for the past week or so, the places in my back where my PE pain was (is?) has returned and steadily gotten worse. I understand that the likelihood of getting a new clot while on thinners is low, but I seem to be a champion clotter. (My first INR even after a bag of heparin was .8, and I've only been at a steady therapeutic level for 2 weeks.)
I read in this post for newbies (http://www.dailystrength.org/c/Pulmonary_Embolism/forum/11865904-advice-newbies ), which is excellent, that it's best to trust your body and instincts, but I suppose I'm having a hard time trusting myself since I now recognize that I was having symptoms for months before things came to a head and even brushed off coughing up blood.
I'm roughly 6 weeks post-Dx, and I thought I was healing quite well because my pain was decreasing and breathing easing. But, for the past week or so, the places in my back where my PE pain was (is?) has returned and steadily gotten worse. I understand that the likelihood of getting a new clot while on thinners is low, but I seem to be a champion clotter. (My first INR even after a bag of heparin was .8, and I've only been at a steady therapeutic level for 2 weeks.)
I read in this post for newbies (http://www.dailystrength.org/c/Pulmonary_Embolism/forum/11865904-advice-newbies ), which is excellent, that it's best to trust your body and instincts, but I suppose I'm having a hard time trusting myself since I now recognize that I was having symptoms for months before things came to a head and even brushed off coughing up blood.
For me, personally, I felt worse at about five weeks than I did at diagnosis. At diagnosis, I only had severe SOB (shortness of breath) and a teensy cough. No pain at all. Five weeks out, I was feeling pretty good, getting more active at work and trying to get back to "normal." But then, I hit a wall. I had a downhill slide over a few hours and wound up exhausted, with pain along my breastbone and spine, and with the SOB rearing its ugly head again.
I had a repeat CT and my clots were gone. I'd just been pushing myself too hard and my healing body pushed back. My doctor (gently) slapped me on the wrist and cut back my work hours. I was much more gradual about getting back to "normal" after that.
If you're getting more active and pushing yourself a little bit harder, it might be that you've just pushed yourself too much. Also, if the weather has recently changed where you live (more hot/humid), then that could have a serious effect on your lungs as well. There's a lot of things that can cause an increase in symptoms and most of them are pretty benign. I had "bouts" of increased symptoms up until about 11 months and they were almost always connected with an increase in activity, a change in weather, exposure to cleaning fumes, etc.
If you start to feel better with rest, then you probably did just push yourself too hard. But, if you're worrying about it and it is keeping you up at nights, then you should go check in with your doctor to make sure all is OK and that things are going well. Getting some guidance is always a good thing, especially if it puts your mind at ease.
I had my PE on 4-4-2014, and my only symptom was having shortness of breath. While in the hospital, I had no pain or weirdness. A few days out of the hospital, I was extremely fatigued, but not too much pain. About a week and a half later, it hit me really hard, and continued to go downhill for a few weeks. I slept upwards of 12-13 hours a day, my chest hurt so bad when I overheated, and with it being very dry where I live (California, so drought), the dust and pollen and wind and heat was making it even worse.
I went for a repeat CT scan because I was scared and in pain, but eventually you sort of learn to figure out the causes. It sure took me a while though, I still get some mild anxiety about it when I'm feeling off.
The number one rule I followed was just to listen to my body, take breaks frequently, and don't do more than your body wants you to do. It definitely takes time, and like TNT said, many factors can add up with the reasons for your pain. Take care!
It's so disheartening to know that the doctors pretty much know what causes blood clots, and certainly how to treat them, but when it comes to healing, we're pretty much on our own. I know every situation is different, but the only answers I got when I asked how long I would feel icky, all I got from the hospital staff was "a little while". Not even that I would be fatigued, get phantom twinges in my lungs, heart rate would get elevated and would be out of breath. I got no help in that aspect.
It was upwards of 7 or 8 months before I felt closer to normal. More than a year out and I feel great now, but the beginning was just so terrifying. I'm glad this board is here, otherwise I would have gone even more crazy! Time certainly is the only factor when dealing with this.